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Thread: zach's back

  1. #1
    Join Date
    Feb 2004
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    columbus, ohio
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    zach's back

    Hi! My name is jenny & my son Zach is 1 tomorrow. I noticed his back curvature at age 7 mos after a growth spurt (he had a G-tube placed for aspiration). His initial xray showed a 15-20 degree curvature- now 5 mos later the curvature is 40 degrees. His orthopedic surgeon has ordered a Boston brace that he will need to wear for years. Is it normal for infantile scoliosis to progress this fast? He also has had open heart surgery for large vsd/asd repair. Is there anything else I need to watch for? I do not have complete faith in my son's doctors. He also has chronic lung disease due to aspiration. I think he may have some type of neuromuscular disease due to all the different systems involved. If anyone has any suggestions or support I would greatly appreciate it. Thanks!

  2. #2
    Join Date
    Oct 2003
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    Utah
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    Hi Jenny, and Happy Birthday to Zach!

    I would seriously consider getting at least another opinion from a pediatric orthopedist who specializes in spine malformations, and who understands the complexity of infants who have scoliosis and other medical issues. He is at an age where he needs to be seen by a ped. ortho every 3-4 months, not longer time inbetween visits. Having a curve progress from 15-20 to 40 degrees in 5 months is proof he possibly needs to be under the care of a different orthopedist.

    You mentioned his aspiration - is he being treated by a pediatric GI doc for reflux?

    Do you know if his scoliosis is congenital (meaning there is at least one bone in the spine that is not formed correctly) or if its idiopathic (meaning the bone structure is normal, just curved)? That will make a huge difference in whether or not a brace is a good idea. I think getting another opinion, as soon as possible, is more important that moving forward with a brace. Please email me and I'll explain why I think this... boulderfam@hotmail.com

    I'm assuming that since Zach has had open heart surgery and has scoliosis that he's had his kidneys checked - if he hasn't, I strongly suggest you have a urology evaluation. The heart, spine and kidneys form during the same time in fetal growth. If there is a structural problem with one, the others should be checked out to make sure there isn't hidden problems.

    It sounds like Zach has several issues going on... I hope you find a good team of docs who will be able to help give you the best recommendations to keep him as healthy as possible. I look forward to hearing from you soon...

    Carmell
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Jan 2005
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    7
    Jenny, my daughter was diagnosed at birth of a undertermined genetic syndrome. She also has a chronic lung disease "Pulmonary Hypoplasia" which means underdeveloped lungs, she is on oxygen and also had a g-tube to prevent aspiration. Taylor was also braced at 1 year and her scoliosis progressed to 54 degrees before she was a year and a half old. Taylor has had 3 spinal fusings, posterior, and we are looking for a 4th surgery at the end of February. Taylor's surgeon wants to fuse from the front (anterior) as well as the back (posterior) but we have to consult with her pulmonologist to make sure she can withstand the anterior fusing being done because you have to deflate one lung to do this. I am interested in knowing how yall are doing.

  4. #4
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    Feb 2004
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    columbus, ohio
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    Tracy, thank you for your reply. It always helps to hear from people who are dealing with the same issues. Zach is doing better. The 1st brace was unsuccessful-his curve rapidly progressed to 48 or 50 degrees (I can't even remember anymore). Six mos ago we went to Minneapolis for a 2nd opinion by Dr. Lohnstein who finally gave us a diagnosis of congenital scoliosis & changed the type of brace he is in. Yesterday he had an xray & his curve is down to 30 degrees! I was very happy, but I know things can change rapidly so I try not to get to hopeful anymore- he definately will need back surgery at some point. Zach had his G tube changed to a GJ tube due to continued aspiration & that has helped his lungs tremendously. I had to push the docs to do a renal ultrasound (per Carmell's recommendation) & one kidney is larger than the other but they don't seem concerned. I get so tired of pushing the doctors to learn more about his condition & am always wondering if there is something we are missing. Does that even make sense? Zach has another eye surgery in a few weeks due to congenital exotropia (the last one was unsuccessful) & his depth perception is really off- he broke his wrist after falling down the stairs 3 wks. ago. Kids are so resilient- he didn't cry at all with the cast- he probably thought it was another brace. The geneticist said that Zach probably does not have any genetic disease, although I find it hard to believe with all that he has going on. Good luck with your daughter & I hope this surgery goes well. Please let me know what the pulmonologist recommends. By the way, is your daughter able to eat orally at all? We are having big time issues with Zach learning how to eat.

  5. #5
    Join Date
    Jan 2005
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    Jenny, yes Taylor eats orally. We took the Mic-Key button out this past Easter, the problem is that she just does not drink enough in my opinion, but so far no dehydration or anything has occured. She eats like a horse!!!! I also find it very hard to believe that a genetic syndrome is not present in Zack. Taylor's Genetisist is Dr. Martinez from Mobile Alabama. Where are you from Jenny? I would love to hear more about your little boy. Good to hear from you too!
    Tracy

  6. #6
    Join Date
    Feb 2004
    Location
    columbus, ohio
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    8

    zach

    Tracy, we live in columbus. ohio. i think the reason the geneticist blew me off was because i took seizure medication during pregnancy. however, i took the exact same meds & dosages with my 2 daughters & they are fine. besides, the meds i take-depakote & cylert do not cause "genetic syndromes", they can cause birth defects, like cleft lip & spina bifida(at least i think so). i was also on very low doses of the medications (especially in the 1st trimester). the geneticist did do some basic bloodwork, but he was convinced from the beginning that it was my meds- he was actually quite rude. zach is able to eat some foods orally & needs thickened liquids, but we are having a terrible time getting him to eat. we went to a feeding clinic & they discontinued all his tube feeding & said he can "live off his reserves & will eat when he gets hungry." we tried that for about a week & he became dehydrated. plus, zach has no "reserves"; he is very skinny even with having tube feeds. zach is also just beginning to make developmental progress & i am afraid if he doesn't have good nutrition that we will go backwards with his development. how did your daughter do after her surgeries? have you looked at any other types of surgery, like titanium rods or spine staples? i know that Cincinnati children's hosp is trying to get FDA approval for spine staples. it is something i am interested in for zach. is Taylor's scoliosis congenital or idiopathic? hope to hear from you soon! jenny

  7. #7
    Join Date
    Jan 2005
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    7
    Jenny,
    Taylor has Congenital Scoliosis. Taylor is too small for rods, so she has had 3 spinal fusings. Taylor just turned 4 in December and she is actually the size of a 2 year old, she is not even 3ft tall yet. Taylor was term and weighed 4lb 12oz, she was 16inches long. I have not heard of the staples you are talking about yet. Is there any problems with your other children? It seems to me that your OBGYN would of known if your meds would cause these problems Zach is experiencing. By the way Jenny how old are you? I am 28 and Taylor is my only child. It makes it so hard to even imagine having other children after you have a special needs child, the possibility that soo many things can go wrong is very scary to me. Talk to you soon.
    Tracy

  8. #8
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    Feb 2004
    Location
    columbus, ohio
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    Tracy, My girls are perfect. I am 33 yrs old & am an RN. I had a high risk OBGYN & I knew the risks with taking depakote. my doctor was great & my girls were fine with the exact meds & dosages. i know that depakote can cause neuromuscular defects, but that doesn't explain the heart defects. i tried to go off my seizure medicine before becoming pregnant with my 1st child, but i had a seizure as soon as i went off the drug even though i hadn't had one in 9 years. i know it must be scary to think of having more kids, but even with all the physical disabilites he is such a blessing. having sisters has also been great for him- they find ways to include him in activities & make him laugh. i would ask the geneticist if he has any idea whether it would be safe to have another child. having zach has truly made me appreciate good health. talk to you again! i tried to attach a picture of zach but i don't think it worked. jenny

  9. #9
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    Jan 2005
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    7
    Jenny the attachment didn't come. How old is Zach now? And any new news?

  10. #10
    Join Date
    Mar 2004
    Location
    Illinois
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    24

    reply

    i'm a sixteen year old girl who had congenital scoliosis and a vsd repaired also. my scoliosis progressed about the same as your son's until i had a spinal fusion of twelve vertebrae at age three, and i had the vsd repaired when i was two. in about ten percent of congenital scoliosis patients, there are congenital heart problems as well. i thought the similarities were interesting. also, i've been seeing doctor lonstein for almost ten years and before that he assisted, he was even present during my surgery in 1992. he is awesome and you are in great hands. after my first surgery i never needed any others, and i stopped wearing a brace at age eight. besides a fairly large curve of fifty degrees, i lead a pretty normal life. i'm interested in other cases of scoliosis, and would like to continue the correspondence!

  11. #11
    Join Date
    Feb 2004
    Location
    columbus, ohio
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    Smile

    Thank you so much for responding! It is so nice to hear that we are not alone & that you are 16 & doing well. We are so glad that we went to Minneapolis for a 2nd opinion- that was when Zach's curve finally got under control. He is holding steady at 30 or 35 degrees.

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